Recognizing Trauma Responses: A Lesson in Compassion

The things Mom's aide did that drove me crazy, I'd done—to survive abuse

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The Aide Parade

One of the toughest things since I started caring for Mom in my home has been finding the right people to work with mom. Someone I can stand to be around for hours. Affordable. Competent. Knowledgeable about dementia, dying and all that that entails. I’ve already written about many of them here:

We’ve had great aides, aides who were only great on paper, and one who walked out because I was, apparently, a cunt¹. Another who cried because her own illness meant she wasn’t up to what we needed. One who aged out with bad back, another who had been here a long time and wanted something new. A developmentally disabled aide. One who thought Mom was a life-sized Barbie doll. I interviewed one who lived two hours away, two who lived down the block, one who lied about her qualifications, another who lied about her experience, one who was amazing but I screwed up and took too long to get back to her.

Sometimes it feels like that carnival game where you have to shoot the ducks that float back and forth. Except I don’t want to shoot the ducks, I want the ducks to work for me and know basic health things, things like the normal range for blood pressure, temperature and so on.

That’s pretty basic stuff, you’d think.

These ducks may not be able to feed Mom, but they can keep her company.

Compassion has a Learning Curve

I’ve had a lot of lessons in patience, compassion and opening my heart. Many in the recovery process, but none so much as the 6+ years caring for Mom in my home.

Like most of us, when she started showing symptoms of dementia more than a decade ago, I thought she wasn’t trying hard enough. I did all the things—by which I mean, shaking her and yelling, “You’re not trying hard enough!”

Fast forward to today, she lives with me and is completely dependent on either me or one of the aides. She can’t feed herself, get herself to the bathroom, shower or dress herself. Frequently, she wakes up at midnight, 3 AM, and 5 AM with a need to pee, although she’s not aware of it, she just knows she needs to go, zoom, get out of bed with no consideration for the fact that she cannot stand on her own and she certainly can’t walk without the walker and someone to support her, hold her up and give her a push to keep her moving.

So, I’m up at midnight, 3 AM and 5 AM and sometimes she has to pee and more often lately, she just wants us to sit side-by-side on the bed, she’s cuddled into me, my arm around her shoulder. Because she doesn’t communicate directly and clearly much anymore, we’re left to interpret what she needs, wants, or means by her actions or facial expressions, derive from context and urgency or lack thereof. I think she needs to know she’s not alone, and the invisible people are not enough, they can’t touch her, hold her.

I don’t think it has to be me. I just happen to be the someone who’s here in the middle of the night.

It broke me a little when I realized what her desire for someone to sit with was a need to be comforted and the inability to ask for it, or maybe even to recognize what it was she wanted. I’m sure that’s part of my resistance to an overnight aide. As sleep-deprived as I am, I don’t want to let go, to be replaced.

This is how one learns compassion, I think. Letting your heart break, a little here, a little there, recognizing a cry for help or tenderness, undisguised, unsophisticated, an ask with no guile, no subtext and now, with no words.

So, I sit, sometimes for a few minutes, sometimes for an hour, until she falls asleep in my arms. I’m tired and it’s sweet and the purest love I’ve ever felt for or from anyone. And sometimes, both of us fall asleep, sitting up, holding each other.

We all need touch to not lose our minds. I talked about that, too.

The New One

Our newest aide has been here for five months of weekends.
I’ve been complaining about her for…five months of weekends.

The Bookshelf : A Metaphor

Each weekend I discover something new she doesn’t know, or I teach her something new and something old drops out.

I imagine she is a bookshelf that can only hold X number of books. If I try to add one more book, even if it’s just a novella, we don’t get 1+X books on the shelf. No, we get (1+X)-1 where one book disappears entirely, and you never know which one it will be. Sometimes, you get (1+X)-2.

But she is so good with Mom

Everyone deserves patience and compassion. Mom responds to her. Aides willing to only work weekends are hard to come by. And as it’s been pointed out, I’m no walk in the park and Mom is less fun with each day.

What We’ve Tried

I’ve made lists for her, notes, put instructions on the refrigerator, spent days showing her what goes where and why, because some of us need to understand the why of a thing for it to stick, so maybe she does too? Nope.

We have an app that lays out the entire day and everything that needs to be done, a visual list of tasks, times, meds, vitals and expectations.

Costs a few bucks but highly recommend this app. VerifyCare.com

Still, something was not adding up.
Something was missing.

Every week, I’d find myself saying, “Okay, remember…

• to tell me when we’re running low on fill in the blank;

• to make enough soup for the next shift;

• not to try to feed her if she’s asleep;

• to use the app;

• that a blood pressure reading of 179/179 and a temp of 77°² means either a) the mechanisms are broken, b) the readings were done incorrectly, or c) Mom is dead.

She has never said we’re low on anything. Does not remember where I keep extra anythings. I taught her to disinfect the commode. I explained why women shouldn’t wipe back to front, anus to vagina.

She tries. She cleans things that aren’t her job. She tells me everything she did; if I’m home, she tells me before she does it.

But if she remembers to wipe properly (1+X), she will forget something, possibily that Mom needs to have a stuffed animal with her whenever she goes out (1+X)-1.

She has good intentions, a good heart.
It’s driving me crazy.

I have so much compassion for my mother, patience for strangers, where is my all that for Mom’s aide? I’m trying to understand…

collect all for the win

Last weekend, because she needs to be taught things, I was demonstrating the whole back to front thing, bent over, literally wiping my mother’s ass (while Mom elbowed me in the ribs, because really, who wants someone puttering around their ass, especially with a third person watching!). I expected the not so new anymore it’s been five month of weekends for god’s sake aide would be watching. Instead, she said, “Oh, look, a bird,” but not really, rather she said something nice about me.

I blew up. I didn’t mean to. But five months of weekends there have been a lot of birds. The bird is almost always a compliment to me. And the lesson, the instruction, the request is just…lost.

“Look, a bird!”

Then, It Clicked.

Compliments, apropos of nothing, out of the context with the situation: Was she shifting focus?
Small odd gifts of things she’d had at home: Why did it feel like approval seeking?

We talked. I asked questions. And listened.

I learned about her abusive first marriage, the 17 stitches she got after he cracked her skull. That he left and she let him take their son, while she stayed in Guyana. Stories of her mother, drunk and checked out, yellow when she died from jaundice and cirrhosis at 42, and the alcoholic father who beat her mother, “all the time.” Her grandmother cared for all five kids while the parents were in their own world.

Adult child of two alcoholics, she was witness to repeated life-threatening domestic abuse—an abusive father, an emotionally crippled mother, and then married an abusive man.

A little bit of compassion started to sneak in. A little understanding.

Compliments, apropos of nothing.
Small, odd gifts

It had the aura of learned survival behavior, looking to please, offering shiny trinkets like a crow—or a child. To find the thing that will take the attention away from “You did this wrong.”

You did this wrong translates to YOU are wrong to a child that raised in neglect and abuse.

Abuse teaches us to deflect, deflect, deflect. Our lives depends on deflecting.

I’m not a psychologist or a social worker. I don’t even play one on TV, but…

I’ve been in physically and emotionally abusive relationships;
Trapped in situations where my life was in danger if I couldn’t diffuse the anger— quickly;
Growing up without enough protection to keep me safe;
A child living inside an emotionally volatile marriage, waiting out the anger and cruelty in the closet or under the bed.
I made up safe places because there were none.

The Click: I’d recognized some of my own past coping mechanisms.

Thirty plus years of recovery and therapy has allowed me to be sober, present, and care for my mother. It helped me recognize her needs, and my own shortcomings and have compassion for both of us, flawed humans that we are.

Rather than replace Mom’s aide, which I thought I’d be forced into, I realized I need to let my compassion flow to include her.

I’ve learned when I don’t know what to do, do the next right thing, always, look to do the next right thing. It’s on me to take whatever steps will make this work for all three of us.

This morning, we sat and talked, again.
I left home, relieved, knowing it’s all going to work out. We can make this work. I can exhale and relax.

When I got home they’d had a glorious day in a surprise summer day in March. Mom was in her pajamas, ready to get into bed.
As her aide left, I tucked Mom in and said goodnight, and wait…

Something is not right.
The pull-up she’s wearing—the Super Sensitive Adult Overnight Pull Ups she always wears.
Except, the outside waterproof surface was inside, and inner absorbent padding was outside.

She’d put Mom’s pull-up on inside out.

And that is today’s lesson in the fluidity of understanding, compassion, and patience.

Did you think I’d show you a photo of Mom in her inside out undies??

BONUS: Want to learn more about dementia and caregiving?

You can find some great books and support my work on my Bookshop.org shelf. You can also follow these folks:

Victoria

at Carer Mentor;

Sammie Marsalli

at Alzheimer’s Home Caregiver;

Tanya Reynolds

at Alzheimer’s Caregiver;

Sasha Neal

at Dementia’s Daughter;

Anna Du Pen

at Betwixt & Between Proxy

Want to know what life was like before, before Mom, recovery, and sobriety? All that and slamming soundtracks at The Dirtygirl Diaries- What I Did For Love.

1. This is, in fact, entirely possible.

2. Not an exaggeration, this happened. I know because it was what she entered into the app.

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